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    • 4 minutes ago
      Ahh Life likes your comment at
      How many times in 2023 did you have an appointment with a Certified Diabetes Care and Education Specialist?
      After 20+ years as a Type I, my appointments are with my endo, where I end up educating him on the latest research. Most endo's patient population is almost exclusively Type 2 and are not as plugged into Type 1
    • 16 minutes ago
      Samantha Walsh likes your comment at
      In honor of GivingTuesday, what are your favorite ways of giving to organizations you support? Select all that apply.
      Correction: Service to others is the rent you pay for your time on earth."
    • 40 minutes ago
      Lawrence S. likes your comment at
      How many times in 2023 did you have an appointment with your main T1D healthcare provider?
      Medicare requires me to see my endo every 90 days if I want them to approve my insulin pump supplies....despite my very good control. Otherwise, my endo would be happy to see me twice a year. An example of Medicare being "penny-wise and pound-foolish" by paying for "medically-unnecessary" office visit costs.
    • 41 minutes ago
      Lawrence S. likes your comment at
      How many times in 2023 did you have an appointment with your main T1D healthcare provider?
      Medicare requires me to see my diabetologist every 90 days to continue receiving pump and CGM supplies.
    • 41 minutes ago
      Lawrence S. likes your comment at
      How many times in 2023 did you have an appointment with your main T1D healthcare provider?
      This past year my doctor appts were my new social life!
    • 41 minutes ago
      Lawrence S. likes your comment at
      How many times in 2023 did you have an appointment with your main T1D healthcare provider?
      @George Lovelace. {{{{{Hugs}}}}} to you, sir. Are you getting support after the loss of your wife? I do hope so.
    • 41 minutes ago
      Lawrence S. likes your comment at
      How many times in 2023 did you have an appointment with your main T1D healthcare provider?
      Schush! I know it's supposed to be 4 but since my Endo follows my Dex and I hit an A1c of 5.4 with 0 Hypos I'm happy. Just lost my wife and will be moving further from my Endo and hope TeleVisits will do as I will also start visiting a Gerontologist.
    • 42 minutes ago
      Lawrence S. likes your comment at
      How many times in 2023 did you have an appointment with your main T1D healthcare provider?
      I would prefer to see my endo twice a year. But insurance requires a visit once every 90 days to obtain an insulin pump and CGM, which is completely illogical. Insulin pump allows for better control soo....
    • 42 minutes ago
      Lawrence S. likes your comment at
      How many times in 2023 did you have an appointment with your main T1D healthcare provider?
      Four, because Medicare. I was fine going 2x/yr for decades before that. But Medicare doesn't care what your Dr thinks. Rules is rules.
    • 43 minutes ago
      Lawrence S. likes your comment at
      How many times in 2023 did you have an appointment with your main T1D healthcare provider?
      I saw my endocrine provider 6 times this year instead of the usual four because I was having pump insertion site absorption issues so she saw me two extra times for problem solving resolution.
    • 11 hours, 55 minutes ago
      Kris Sykes-David likes your comment at
      If you’ve ever used a connected insulin pen (also known as a “smart pen”), what was your experience like? Tell us more in the comments! A “smart pen” connected insulin pens can offer extra technology with the simplicity of injections, like tracking the timing and dose of insulin, tracking insulin-on-board, and calculating insulin doses based on carbohydrate entries.
      It helped me track when and how much insulin I had injected. It also would show me how much I had on board so if I needed to take additional insulin it would help me not to stack too much at a time.
    • 11 hours, 55 minutes ago
      Kris Sykes-David likes your comment at
      If you’ve ever used a connected insulin pen (also known as a “smart pen”), what was your experience like? Tell us more in the comments! A “smart pen” connected insulin pens can offer extra technology with the simplicity of injections, like tracking the timing and dose of insulin, tracking insulin-on-board, and calculating insulin doses based on carbohydrate entries.
      I love it! Can't live without one.
    • 18 hours, 43 minutes ago
      TEH likes your comment at
      How many times in 2023 did you have an appointment with your main T1D healthcare provider?
      Four, because Medicare. I was fine going 2x/yr for decades before that. But Medicare doesn't care what your Dr thinks. Rules is rules.
    • 18 hours, 44 minutes ago
      TEH likes your comment at
      How many times in 2023 did you have an appointment with your main T1D healthcare provider?
      I would prefer to see my endo twice a year. But insurance requires a visit once every 90 days to obtain an insulin pump and CGM, which is completely illogical. Insulin pump allows for better control soo....
    • 1 day, 9 hours ago
      Janis Senungetuk likes your comment at
      How many times in 2023 did you have an appointment with your main T1D healthcare provider?
      Medicare requires me to see my endo every 90 days if I want them to approve my insulin pump supplies....despite my very good control. Otherwise, my endo would be happy to see me twice a year. An example of Medicare being "penny-wise and pound-foolish" by paying for "medically-unnecessary" office visit costs.
    • 1 day, 14 hours ago
      KarenM6 likes your comment at
      In the past year, have you been required to change medications because of your health insurance?
      In July, I went on the only Medicare plan in my area that covered Afrezza. For 2024, no one is covering it. Like others, hate these formulary decisions by the Insurance providers.
    • 1 day, 17 hours ago
      Ahh Life likes your comment at
      How many times in 2023 did you have an appointment with your main T1D healthcare provider?
      Schush! I know it's supposed to be 4 but since my Endo follows my Dex and I hit an A1c of 5.4 with 0 Hypos I'm happy. Just lost my wife and will be moving further from my Endo and hope TeleVisits will do as I will also start visiting a Gerontologist.
    • 1 day, 17 hours ago
      Bekki Weston likes your comment at
      In the past year, have you been required to change medications because of your health insurance?
      Yes, I HATE FORMULARIES and how they control what medications I take, as opposed to what my doctors prescribed.
    • 1 day, 17 hours ago
      Bekki Weston likes your comment at
      In the past year, have you been required to change medications because of your health insurance?
      I answered NO for 2023 but in 2024 I will have to switch from Humalog to Novolog.
    • 1 day, 18 hours ago
      Bill Williams likes your comment at
      How many times in 2023 did you have an appointment with your main T1D healthcare provider?
      Four, because Medicare. I was fine going 2x/yr for decades before that. But Medicare doesn't care what your Dr thinks. Rules is rules.
    • 1 day, 19 hours ago
      Kristi Warmecke likes your comment at
      In the past year, have you been required to change medications because of your health insurance?
      With Medicare's change to the cost of insulin, my Part D plan dropped Novolog. $35 "limit" only works if insurers have your medication on their formulary.
    • 1 day, 19 hours ago
      Kristi Warmecke likes your comment at
      In the past year, have you been required to change medications because of your health insurance?
      I was with Caremark now with Optimum and not a fan but was not a fan of Caremark in the beginning. Not a fan of mail order insulin! Opimum (still not sure it is spelled right) made me change from Novalog to Humalog. Both are the same, sure, but why should a RX company say what insulin I should be taking. Is that not my endocrinologist job? Would they not know what is best for me? Kind of burns me up how healthcare has gone in the past 5 to 10 years, miss the old days of knowing your pharmacist by first name and talking to them about the latest advancements in diabetic care at the conner pharmacy. Patient is no longer a factor in the equation. sorry for the rant.
    • 1 day, 19 hours ago
      Kristi Warmecke likes your comment at
      In the past year, have you been required to change medications because of your health insurance?
      Lispro, aspart, and glulisine are also FDA-approved for pump use (https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6695255/). These are the generic versions of Humalog, Novolog and Apidra, respectively.
    • 1 day, 20 hours ago
      jo likes your comment at
      How many times in 2023 did you have an appointment with your main T1D healthcare provider?
      This past year my doctor appts were my new social life!
    • 1 day, 20 hours ago
      jo likes your comment at
      How many times in 2023 did you have an appointment with your main T1D healthcare provider?
      Schush! I know it's supposed to be 4 but since my Endo follows my Dex and I hit an A1c of 5.4 with 0 Hypos I'm happy. Just lost my wife and will be moving further from my Endo and hope TeleVisits will do as I will also start visiting a Gerontologist.
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    Have you ever volunteered with a diabetes-related organization?

    Home > LC Polls > Have you ever volunteered with a diabetes-related organization?
    Previous

    In the past week, how many nights was your sleep disrupted by device alerts, checking blood glucose levels, or treating a high or low?

    Next

    If you have T1D and have had a confirmed case of COVID-19, what symptoms did you experience? Please select all that apply.

    Sarah Howard

    Sarah Howard (nee Tackett) has dedicated her career to supporting the T1D community ever since she was diagnosed with T1D while in college in May 2013. Since then, she has worked for various diabetes organizations, focusing on research, advocacy, and community-building efforts for people with T1D and their loved ones. Sarah is currently the Senior Manager of Marketing at T1D Exchange. Sarah and her husband live in NYC with their cat Gracie. In her spare time, she enjoys doing comedy, taking dance classes, visiting art museums, and exploring different neighborhoods in NYC.

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    26 Comments

    1. Leona Hanson

      I’m usually no where near an organization to volunteer .I’m 2 hours from town and my other half does not get much time off to go anywhere.i don’t have a driver’s license.

      2 years ago Log in to Reply
      1. Mark Fuller

        Barton Center for Diabetes Education

        2 years ago Log in to Reply
    2. Karen Maffucci

      I use to many years ago. JDRF in Wyoming and Virginia.
      None recently.

      2 years ago Log in to Reply
    3. Virginia Barndollar

      I volunteer at Camp Courage, a week long camp for kids with T1DM. It is one of the best weeks of my summer.
      Most of our medical team also have T1DM so it’s great for us adults too.

      2
      2 years ago Log in to Reply
    4. Patricia Dalrymple

      Many years ago I went to one meeting. They served pizza and real coke at an organizational meeting. I didn’t go back. 😜

      2
      2 years ago Log in to Reply
      1. Vicki Breckenridge

        I was on the Community Leadership Board with the ADA for 10 years until they closed the office in Iowa. I worked as an RN at a free diabetes clinic at our county hospital. It was so rewarding!!

        1
        2 years ago Log in to Reply
    5. Bob Durstenfeld

      Yes, but not recently, I used to volunteer with a local Diabetes organization that no longer exists, I use to coach newly diagnosed teenagers and I would explain that T1D is like having a pet rattle snake, you have to feed and tend. But it may bit you anyway.

      4
      2 years ago Log in to Reply
    6. Mick Martin

      That REALLY depends on what YOU mean by “volunteered with a diabetes-related organization”.

      I have spoken with a Politician in the British Government about how useful using an insulin pump is in relation to treatment of diabetes. (I was the first person in the area of the country that I live to have been issued with an insulin pump (CSII or Continuous subcutaneous Insulin Infusion) and it made remarkable changes to my experience of living with type 1 diabetes.

      The idea put forward by my endocrinologist was that pump technology should be made more avaiable to a wider range of diabetes sufferers, and it was he that arranged the meeting between the Member of Parliament (Politician) and myself.

      Happily, more diabetes sufferers are now able to utilise [utilize] pump technology in the UK (United Kingdom of Great Britain and Northern Ireland).

      2
      2 years ago Log in to Reply
    7. George Lovelace

      I formed a Local Support Group for Insulin Users some 20 years ago. It is rewarding to see some of the kids grown up and now active themselves in supporting others!

      1
      2 years ago Log in to Reply
    8. Ahh Life

      Public speaking on living and managing the T1D condition. Quite an honor.

      Although, I should add, compliance, listening, and learning are not always my greatest virtues. I tend to talk about real life and real issues, all leaned in the college of hard knocks. I started attending that college at four years of age. I don’t think I’ll ever graduate.

      4
      2 years ago Log in to Reply
      1. Tom Caesar

        My impression is you have a PHD!

        2 years ago Log in to Reply
    9. connie ker

      I like to volunteer for research studies that I can participate from my home. I am a senior with T1D, but remember driving to our state capital with our 2 young sons for research. This was in the early 1990s and both were tested for markers of developing T1D. The labs reported younger son was positive, the older sibling negative. Sure enough even after taking pills in the research, positive son was diagnosed in 7th grade.

      1
      2 years ago Log in to Reply
    10. Marcie Dutton

      I volunteered this past summer for ADA camp. It was a wonderful experience! Will be applying again this year.

      2 years ago Log in to Reply
    11. Sherrie Johnson

      I am involved with Joslin in Boston. 50 year medalist study and another one studying stomach enzymes.

      1
      2 years ago Log in to Reply
    12. Nicholas Argento

      JDRF annual fundraising drive, big deal in my office- my team has raised on the order of $200,000 over the last 20 years…I’ve also testified before FDA on T1diabetes related topics at the request of some organizations……….and tried to get Medicare to change their STUPID dangerous pump policy requiring quarterly visits in order to get supplies, indefinitely, regardless of need. Some might remember the survey we did w myGlu- showed that 40% of those on Medicare w a pump adopted potentially adverse behaviors in order to cope with this madness, or had adverse outcomes. Medicare officials could have cared less and kept a baseless requirement in place, with no evidence basis for its existence, because we could not get strong enough evidence that it was harmful. This ignores the fact that their was no evidence basis for the requirement in the first place. ADA in their treatment guidelines explicitly states that no basis for mandatory timed follow up intervals exists. So we are stuck w a dangerous requirement.

      3
      2 years ago Log in to Reply
      1. Janis Senungetuk

        I donated artwork for a JDRF gala. When I offered to do a short presentation on life with long duration T1 at a public monthly meeting, my offer was dismissed because the time was needed to organize for another fundraiser. I haven’t volunteered for an organization since then. My diabetes-related volunteering has been as a participant in various clinical trials and in 50 Year Joslin Medalist research.

        2
        2 years ago Log in to Reply
    13. KCR

      I am a moderator for a DOC forum.

      2 years ago Log in to Reply
    14. Linda Zottoli

      I used to volunteer (ADA events and mailings, JDF fundraisers –I think that was the old name, sponsored support groups, etc.). It was a great way to have contact with others who often had similar issues that we could discuss. Now I guess I get enough contact on-line.

      2 years ago Log in to Reply
    15. Ernie Richmann

      JDRFf and Camp Ho Mita Koda, a camp for type 1 diabetic children.

      2 years ago Log in to Reply
    16. William Bennett

      Yes. I’m a moderator for TUDiabetes, a DOC forum.

      2 years ago Log in to Reply
    17. Kim Murphy

      I don’t know of any T1D organizations where I live.

      2 years ago Log in to Reply
    18. Mike Ecks

      yes, JDRF and family members have volunteered as well.

      2 years ago Log in to Reply
    19. n6jax@scinternet.net

      Yes.. but always rejected because I am OLD!! 18 years ago at 70 I tried to get involved with Joslin when I had T1D 50 years.. They wanted proof… All my Doctors were Dead.. I did not want a medal.. just study me to see why I was otherwise so healthy ?? From Sweet Charlie..

      2 years ago Log in to Reply
    20. Wanacure

      I volunteered once to sit at a table for local Winter holiday season: Ginger Bread House with JDRF. I used to contribute $ every year to JDRF hoping to speed a cure. As a college student I volunteered for many research projects at University of Washington and at Pacific Medical whenever I saw a poster or an ad in the campus newspaper. I started a Type 1 Diabetes Support group in my home via a Free University setup and learned a lot from other T1Ds who signed up, very rewarding.

      2 years ago Log in to Reply
    21. ConnieT1D62

      Yes in my late 20s and early 30s with ADA as a peer mentor for young adults with diabetes; from 2009 to 2019 as a PODS Leader and regional representative for for DiabetesSisters.org; and lately as a RN, MSN, CDCES (CDE) two days a month with a free clinic for the homeless and underinsured in Albany, NY.

      2 years ago Log in to Reply
    22. Randell Cole

      I use Dexcom G6 and have never had one that I did not have to calibrate a lot, I din’ feel they should advertise as reguiring no calibration

      2 years ago Log in to Reply

    Have you ever volunteered with a diabetes-related organization? Cancel reply

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